About Us

The Scleroderma Foundation: The National Resource for People with Scleroderma

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The Scleroderma Foundation is the national organization for people with scleroderma and their families and friends. It was formed January 1, 1998, by a merger between the West Coast-based United Scleroderma Foundation and the East Coast-based Scleroderma Federation. The national office is headquartered in Danvers, Mass.

Our Three-Fold Mission of Support, Education and Research

  • Support: To help patients and their families cope with scleroderma through mutual support programs, peer counseling, physician referrals and educational information.
  • Education: To promote public awareness and education through patient and health professional seminars, literature and publicity campaigns.
  • Research: To stimulate and support research to improve treatment and ultimately find the cause of and cure for scleroderma and related diseases.

Support

The Scleroderma Foundation offers the following tools and resources in support of people livingwith scleroderma and their families:

  • Has a nationwide network of 24 chapters and more than 150 support groups
  • Staff a toll-free helpline providing information and referrals to callers
  • Publish a quarterly magazine called "Scleroderma Voice"
  • Offer a variety of brochures, booklets and newsletters, along with our informative website

If you recently were diagnosed with scleroderma, you may want to check out our free brochure downloads or visit our newly diagnosed section for more information.

Additionally, the Foundation hosts an annual National Patient Education Conference. The conference offers various educational and networking opportunities for people living with scleroderma, their caregivers, family members and friends. Workshops, panel discussions and other educational sessions are led by the leading scleroderma researchers and healthcare professionals.

Education

As part of our education mission, we not only perform all the functions mentioned above, we also work with our Medical Advisory Board of internationally known scleroderma experts. 

Research

Currently, we budget an average of $1 million per year for research funding, our single largest budgeted expense. The Scleroderma Foundation takes its fiduciary responsibility to donors very seriously, especially with regard to our research grant program.

In the case of research funds, the Foundation's Peer Research Review Committee, composed of medical experts on scleroderma from around the world, helps determine which proposals will be funded by reading, analyzing and ranking all proposals received.

Learn more about our research program >>

Contact Us

You can contact the Scleroderma Foundation from 8:30 a.m. to 5 p.m. (Eastern) Monday through Friday. Our toll-free number is (800) 722-HOPE (4673). If you call outside of those hours, please leave us a message.

To contact a local chapter or support group in your area, please click here.

2013 Annual Report

2014 Audited Financials

IRS Form 990